Saturday, May 07, 2005

I’m damn tired of people who have little or no experience with attention-deficit/hyperactivity disorder (AD/HD* telling me that I’m drugging my son, that only children and not adults have AD/HD, that AD/HD can be “cured” by dietary changes or herbal preparations, or that AD/HD meds are being pushed on kids. If you haven’t lived with anyone with AD/HD or you’ve lived with someone who has only extremely mild AD/HD, your experience isn’t necessarily everyone else’s—or even anyone else’s.

The disorder is a neurobehavioral one, and many Americans are biased against diseases and disorders they can't touch. If it’s not a broken arm or a rash but a disorder of the brain, it doesn’t exist for them. Spotty performance in school and in life is so AD/HD. It's not that those with the disorder can't pay attention; it's that they can't screen out which stimuli to pay attention to and which to put on the back burner for a time. When highly motivated, they can seem to have a superhuman ability to focus. But many tasks that they don’t enjoy require integrating multiple mental functions, and in AD/HD, executive function is impaired. Executive function is that part of your brain that helps you organize and integrate the multiple things you are doing at any one moment. It's also the part that says, "Hey—ignore that random thought that just popped into your head. You can think about it more once you've finished this other task that you’re working on."

My son Neil, now 10, had his severe AD/HD diagnosed at the end of 1999, when he was almost 5. My husband, Ed, had his own milder AD/HD diagnosed in 2000, and my father-in-law, A., had his severe AD/HD diagnosed in 2001. Life was hell here before they all began taking medications and seeing therapists. I don't know how my marriage survived. I don’t know how we all survived.

Neil is a very bright child who's now gentle and sweet and making nearly straight A's in school, in a self-contained classroom of 6 students, 1 teacher, and 1 teaching paraprofessional. That wasn’t always the case. Just about 18 months ago, he was stuck with a psychiatrist who gave him far less medication than he needed, and he was often refusing to do work in his classroom of 25, sometimes even hiding under his desk when he got overwhelmed, refusing to come out. His grades were low, even though we knew him to be quite smart.

We knew there was something different about Neil from the beginning. He had tantrums, even as a baby, when we had to change activities. Transitions were almost physically painful to him. We learned to gradually ease him into changes. You know how toddlers have tantrums when things don't go their way? Neil's tantrums were hairy fits. Though Neil was Ed's first child, I had 11 years' parenting experience on him. I had a daughter from my first marriage, so I knew for sure that Neil's fits were over the top. If Neil's toys weren't doing what he wanted them to do, he could get angry enough to scream for 2 hours. Ed and I stayed perpetually exhausted from those fits. We stopped having friends over because of those uncontrollable fits of anger. We never could be sure what would set him off. Once, when we did dare to have friends over when Neil was about 4 years old, I paid for it afterward. As I was trying to rock Neil in a rocking chair to calm him for bedtime, he hit me and screamed for at least 15 minutes. All the excitement and stimulation of the day had been too much for him, and he had to let it out.

That child just could not sit still. When he was a preschooler, he was at home with me while I worked. By the time Ed would come home from work each day at around 6 p.m., Neil would have started and left unfinished at least a dozen art projects. He ran constantly—he never walked anywhere. He could literally climb walls. And he hardly stopped to breathe when he was talking, which was all day, every day. Neil never looked happy, even when his actions showed that he was enjoying himself. Ed and I have always said that Neil was born a cranky old man.

During those horrible years before Neil's diagnosis, Ed's and A's undiagnosed AD/HD was multiplying the chaos by several orders of magnitude. Ed would be talking with me, and his attention would wander off, meaning that he’d miss chunks of what I was saying. I didn't know then that he just couldn't pay attention to me; I thought he didn't want to. This made coparenting extremely difficult; I often had to keep Ed on task while he was trying to parent. Having to be your partner's coach can be toxic to your marriage.

Meanwhile, A. would have the same kind of temper tantrums that toddler Neil had—but A. was in his early sixties. Why did this affect us? We live in an intergenerational home: We have the upstairs and A. and my mother-in-law, D., have the downstairs apartment that Ed, a talented cabinetmaker, created in our house. Once, when my daughter Rebecca was a teenager, A. scared her out of her wits. A. and D.'s dog Rusty had escaped from the back yard and was roaming the neighborhood. A. bellowed for him a few times, and then, frustrated because Rusty didn't want to come back to an angry-sounding owner, began repeatedly beating the side of our house with Rusty's metal leash, screaming, "Rusty! Rusty!" A's short, but he's a hefty man, and his anger was visceral and quite intimidating. He's also been known to beat on a blender when he can't get it to work. Scary.

Then there was the night, back when Neil was a baby, when A. came upstairs to get his and D.'s laundry from the washing machine that we all shared. He began chatting in the kitchen with Ed. The conversation stretched on for a while, and I was trying to put Neil to bed just a few feet away. (It's a small house.) I leaned around the door jamb and said, "Could you guys please keep it down a bit? I’m trying to put Neil to bed." A. charged me, his arms pumping as he stomped toward me. "Who the hell do you think you are, telling me to be quiet?!" he shouted in my face, while baby Neil lay screaming on the changing table that I was standing next to. I was scared speechless. I thought A. was about to punch me.

Neil, Ed, and A. would each say whatever they were thinking at the time, AD/HD having taken away the mental brakes that most people have. This often resulted in hurt feelings, anger, or embarrassment—or all three. Each of them had frequent misunderstandings with people outside the family too, because people with AD/HD often have trouble understanding others' facial expressions and body language. This caused Ed and A. difficulties at work and resulted in Neil's being picked on by children at school. It also meant that D. and A. argued constantly ... and, I have to admit, Ed and I argued constantly.

Ed now takes Metadate-CD for his AD/HD. Neil takes that for his too, plus Lexapro [updated] for his depression. A. takes Wellbutrin. Because of A's high blood pressure, he can't take most of the meds prescribed for AD/HD; he doesn't like some of the side effects of the others. None of the guys are drugged-out zombies. All of them are functioning much better at home and at school or work. You'd never know Neil has a disorder if you didn't live with him; he comes across as a normal, pleasant, if fairly serious, 10-year-old. He even smiles a lot now, and he has good friends. We have no doubt that he’ll go on to make wonderful contributions to the world. There are very few huge, explosive fights around here, upstairs or downstairs. Ed and I have an excellent marriage. And because Ed can focus with the meds onboard, he has been able to learn enough people skills that he was recently promoted to foreman at work, the first time in his life that he's held such a position. That's done wonders for his self-esteem. Even though A's AD/HD behaviors can still drive D. bats, his anger's under control, and she likes that, especially since they're both retired now and are together most of each day. A. and I even get along now.

Here are some readings that may help you understand:

Go here (be sure to read the section "What are the Executive Functions?") to read about executive function.

Go here to experience what AD/HD feels like. Scroll way down to the link that reads: Try it yourself. Experience an auditory distraction. You'll get quite an education.

In the United States, if a child has an official diagnosis of AD/HD, the public school district is required to give him or her appropriate education, which begins with the development of an individualized education plan (IEP). See this.

Research has shown that if a child can't learn all he or she needs to know and has impaired social relationships, he or she is more likely than children without AD/HD to one day self-medicate with alcohol or street drugs and is likely to have serious lifelong difficulties in holding a job and maintaining close relationships. (See, for example, "Attention deficit hyperactivity disorder [ADHD] and substance use disorders," JJ Wilson and FR Levin, Current Psychiatry Reports 3[6]:497–506, 2001.) Do parents want to condemn their children with AD/HD to that? If not, they should at least consider all the treatment options. And they should know that my family and I have considered all the treatment options and found the ones that work for us ... and that they can't presume that what works for them will work for us or that what they've read in a layperson's book and never tried will necessarily work for us.

I have amassed a mountain of bookmarks to information on AD/HD. Please write me at editormom@kokedit.com if you’d like me to send them to you.

Updated: Jared's AD/HD was diagnosed in 2006, when he was 5. He has been taking Metadate-CD ever since. He began third grade in the fall of 2009, and we then began the long process toward an IEP that begins with a request for assessment by the school.

Also, we have long suspected that D., Ed's mother, has mild AD/HD, but it has not been diagnosed or treated because she has learned enough coping skills over the years on her own.

____________________________*Here, I am following the style of the American Psychiatric Association, which uses the slash to indicate that the hyperactivity part of AD/HD does not occur in all cases. There are several subtypes of AD/HD, according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision: (1) attention-deficit/hyperactivity disorder, combined type; (2) attention-deficit/hyperactivity disorder, predominantly inattentive type; (3) attention-deficit/hyperactivity disorder, predominantly hyperactive-impulsive type. Neil and A. have type 1, and Ed and Jared have type 2.

18 comments:

I could probably email you with this question, but perhaps the exchange will be helpful to other readers.

Pieces of your story resonate with me.

A member of our family seems to have a split personality. At home she's jumpy, constantly whiny, and intensely combative. At school she's extremely quiet and compliant. If you watch her with her classmates, she seems almost shut down. (But several years ago there were under-the-desk days, like those you describe, after she surprised us by letting loose and getting into mischief at school.)

At home she uses her considerable intelligence to try to control everything. She's very canny. Sometimes her combativeness escalates until she's terribly hard to live with. Then I crack down hard, and she seems very relieved that I've done so. On occasion she says she wishes I were more strict, even though she fights every limit I try to set.

With people she doesn't know well, she's either silent or goofy. She can't seem to figure out how to engage with them, so she either shuts down (most often) or acts up. There's almost never an in-between, appropriate-interaction mode.

Sometimes I suspect that her shut-down mode is like self-medication for her. It seems to be how she copes with whatever it is she needs to cope with--and I suspect that what she's coping with is overstimulation. The effort of being out and about with people seems to fatigue her. We were out with other people all this past weekend, and she carried her backpack everywhere so she could read or do homework if she wanted to. She seemed to know she might need it as a refuge.

Because she is able to be so still and quiet at school, it seems crazy to suspect something like AD/HD, but whenever I read stories of the disorder, they resonate with me and make me think of her.

My question, then: You've probably heard many stories of kids with AD/HD. Is it plausible that a kid with hyperactivity would be able to keep it in check in certain settings, but at the expense of being able to interact normally?

Meg, what you've written makes a lot of sense to me. It's very possible your daughter has a form of AD/HD. My son Neil, as severe as his AD/HD is, could rein in some of his behaviors some of the time at school before he was on the right medication—because he instinctively knew that home was a safer place than school to be "different." Having to spend so much energy trying to control himself made him need to explode when he got home from school each day. From kindergarten through about second grade, I knew to expect after-school tantrums . . . just when I wanted to hug him and welcome him home. It broke my heart.

My son has long done the "either silent or goofy" thing. He'd be such a quiet mouse at church that our friends there would look at me as if I were hallucinating when I'd tell them how at bedtime, he'd be so wound up that he'd literally climb up the walls of our home's narrow hallways. And he's often seemed relieved when I've gone into drill-sergeant mode. It's as if when children like this get so out of control, they need someone to snap them back to a more regulated self; they can't do it for themselves, and it feels much better to be back in control.

Of course, your daughter could have something other AD/HD; I'm not a psychologist or psychiatrist. Get her a good neuropsychological workup. Whatever her needs turn out to be, it will take a lot of work by your whole family to help her. Family therapy and constant reading on her condition are musts. But I know you and your family can do that.

The most important thing is to find out what's going on and get your daughter the assistance she needs before her condition affects her self-esteem too much. Girls who have AD/HD more often have the primarily inattentive type, so they're most often not disruptive enough to get the help they need. Many of them end up falling through the academic cracks and as women are seen as ditzy when they're really not.

Though having one or more family members with AD/HD is a lot of work, things can be good. My husband and I are still madly in love after almost 12 years of marriage; we're each other's best friend. Neil has had a huge leap in maturity over the last few months, and we are enjoying him so much. As one of Neil's past psychiatrists once said to Ed and me, "Children like this don't want to be the way they are [argumentative, disorganized, inattentive, confrontational]. They desperately want not to be the way they are." It helps to know that they're not "being a pain" because they want to. With the right meds and the right school setting, Neil has blossomed like the most exquisite flower. He is beautiful, and it is so much easier to love and like him.

Some of those things really sound familiar. The "tired wired" mode at bedtime, the tendency to act out after keeping herself cooped up in her quietness all day. When she had those terrible months at school a few years ago, on the other hand, she was an angel at home.

Although I don't oppose the use of medication, I think it's best to look at nonmedication options first, and I get nervous about going anywhere even in the direction of medication.

Increasingly I'm worried about her as she gets older and not any closer to growing out of what everyone says she's bound to grow out of.

I agree that nonmedication interventions are the first thing to try. Some children with very mild AD/HD can do well without medication by getting therapy to help with self-esteem and anger control, to learn coping strategies (setting alarms and writing notes as self-reminders; learning to break tasks into steps so they're not overwhelming), and to learn social skills that children without AD/HD pick up on their own. Often, family therapy is necessary, and always, a behavior management plan to be followed both at home and at school is necessary.

Other children need both medication and therapy.

Whatever treatment works, it's generally ongoing. Despite popular misconceptions, AD/HD doesn't go away when one reaches adulthood. It's just that maturity and learning coping skills can mask some of the more obvious AD/HD behaviors.

Hang in there, and don't rest till you find out what's up with your daughter, whether that's AD/HD or something else. It'll be a tough road, but she'll have a much tougher road if you don't. Once she has a diagnosis and is in treatment, life can begin to get easier for the whole family.

And here's a dirty little secret that most parents of a "difficult" child won't admit to: It's hard to like someone who is always disrupting things and causing chaos and hurt feelings. But that's human. For years, I loved Neil but didn't much like him. I was ashamed of that and thought that it made me a bad parent. It just made me human. Now the whole family enjoys Neil. Treatment saved our family life and quite possibly, the quality of his future life.

Unfortunately, many people out there like to sit in judgment when they have no understanding of a disorder or its treatments. I remember getting so enraged when a co-worker went off about how society uses medication as a crutch, and if people would just eat better, exercise, and use natural remedies, they would not need all those drugs. WTF? Has he ever lived inside my body? Does he know what it feels like to have his heart pounding and skipping beats, and feel like he's going to pass out from the shortness of breath? No amount of exercise and vegetables is going to make that go away. Know what does? A beta blocker. That’s right, a drug. And I won’t let him make me feel ashamed about “dependencies” and “crutches”. Jerk!

There was another time, back in high school, when a (Republican) friend, was mad that Lawton Chiles got re-elected as governor of Florida, because he was a “druggie.” This name-calling was based on the fact that he took ANTIDEPRESSANTS. I called her out into the hall and told her she should know more about the person she’s talking to before spewing such ignorance, because I was, by her definition, also a druggie. She was embarrassed, said she didn’t know I was on antidepressants, etc. Just another case of people thinking they know what’s better for you than you and your doctor do. Jerks, jerks, jerks!

I’m so glad your family has found a treatment that works! Best of luck to all of you.

Yes, there are a lot of people out there who can't understand a situation until they've lived it. In fact, I know one woman who pretty much went around saying that there's no such thing as AD/HD. She was quite angry when her nephew's teacher suggested to the boy's parents that he might have AD/HD. After denying that he had any difficulties, the parents finally gave in and took him to a doctor to get a diagnosis. Guess what? After a few weeks on AD/HD meds and with a few accommodations at school, he no longer hates school and is making straight A's! The aunt has thanked me privately for pointing her to information on AD/HD that she could share with her sister and brother-in-law, but she's kept quiet on the e-mail lists we both subscribe to whenever the topic of AD/HD has come up lately. I'll keep her secret because I respect her privacy, but her keeping the whole thing quiet helps add to the cumulative stigma that some attach to AD/HD.

And hey . . . I take antidepressants, too. They keep my generalized anxiety disorder down to a dull buzz amidst the chaos that sometimes fills my home. Just because 30-plus years ago people with AD/HD and depression and anxiety had to suffer their whole lives because there weren't good meds, that doesn't mean that people today have to do the same thing. It doesn't make anyone a better person to be depressed her entire life, or to be unable to learn well or have good relationships. Must be some weird part of American Puritanism. You know the attitude: You're a good person only if you live life the hardest way possible.

I got irritated enough by people with no medical knowledge claiming that ADD doesn't exist too, I created a web page called "does add really exist?" and I give some examples of how to explain it and lots of links to clinicial evidence of ADD as a real condition. Here's the URL if you want a look.

Wonderful, Pete! Thanks very much. I've added your page to my AD/HD bookmarks. It's always great to have plenty of resources when dealing with AD/HD nonbelievers. They should all come live a day in one of our households, eh? ;-)

One thing I've noticed is that some people who really attack the notion of ADD as a real condition often have undiagnosed ADD themselves. It's almost as if they believe attacking a diagnosis in someone else will prevent them from having to look inside themselves and recognize and deal with what's there.

You may also be interested in another page on my 100 page+ ADD resource website. It's for teaching Students with ADD. Has links to 34 Articles & Ebooks.http://www.addcoach4u.com/teachingstudentsadhd.html

I've just found this site via the NYTimes columnist who sort of recanted. The responses on that blog - some of them - made my blood boil, which it need not do any more than it already does.

I like this place. I. too, am writer, editor, Quaker, mother of a girl with AD/HD, a person with AD/HD and three sibs who all have it. My mother, born in 1916 clearly had it and bless her mean old heart, understood this before she died a few years ago. It also clarified her father's erratic behavior (and wow, they didn't have TV or eat junk food) as well.

As the ADD mother now of an ADD child, I can appreciate the way my mother came to be so angry. It's a wonder we were all allowed to live to be adults.

As a matter of interest, I self-diagnosed, then understood what was coming down the road for my then-7-year old daughter. NO ONE got it. No one wanted to get it. Only my sister, who, like me, was in a professional position to understand it, and who herself was struggling with AD/HD, still undiagnosed.

The doctor who didn't diagnose my daughter - and as much as suggested I couldn't be relied on as a credible observer or thinker due to MY neurological impairment (which he would never have said if I weren't diagnosed, and medicated) -- was apparently the lead investigator for a study eventually published on MedLine or someplace which clarified that indeed, children were NOT being over diagnosed or over medicated. I'll say.

To go way farther than most would dare, I also say this: while people think parents who give their children medications are doing it for their own benefit, in my family, my daughter's impulsivity was making me so irritated. She'd whack me every time I walked by, not enough to hurt, but enough to interrupt my tenuous grasp on consecutive thinking, and it would annoy anyone. She was instantaneously sorry, so this was not "acting out" by any stretch of the imagination.

I found myself AVOIDING her, without at first realizing it. All children need their parents to WANT to be with them. Even if I WERE the sort to want things easier solely for my own benefit, how does that not benefit the child, if it renders her more congenial?

We are a case of everything they say (the luminaries) about how to manage this disorder being not-true-enough.

Early diagnosis. Medications administered with care and at proper amounts and frequency. Parents who do not criticize what the child can't help. Empathy, understanding, time, organic food, acceptance, a school more supportive than most (while not getting it at all and thinking I am an idiot, etc.), no social problems except shyness, a great group of friends, and Guess What?

At 14 she is at home with a private teacher, her friends calling less and less frequently, has given up every activity she loves, due to an intractable anxiety that at this point is far more disabling than her severe ADD and executive function impairment.

No one can tell me -- ever -- that life can be just fine... IF. We took care of all the "IFs" and life is still hard, so much of the time.

I am planning to write "The Book of Trrrruth," which will have stories from the familie4s who live this every day. Horror stories. No more damned pablum, bromides and sanctimony. Ned Hallowell is a very nice man who is dead wrong about the science of AD/HD. There are NO studies with any scientific value that demonstrate the high intelligence and greater creativity he attributes to people with AD/HD.

Smart people hang out with smart people. The ones with ADD will find each other.

I have an article I wrote a few years back called "The New Mythology," which I can send to you if you are interested.

I edited the online publication, "ADDvance Online Magazine," now defunct, on the website www.ncgiadd.org and wrote monthly pieces about AD/HD. I've got a PhD in psychology and an ADD in ADD.

My name is Tricia Hurley and i would like to show you my personal experience with Wellbutrin.

I am 54 years old. Have been on Wellbutrin for 1 year now. Helps with depression. No weight gain like with Zoloft or decreased libido like with Prozac. I do think Prozac worked better and the only reason I went off it was my husband complained about that libido thing.

I have experienced some of these side effects -Involuntary jerks of hands and legs. Feels like when you're about to fall asleep and suddenly jerk awake, but this is in the daytime. Often feel like adrenaline is flooding my stomach.

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